Individuals' Perspectives on Coping with Vision Loss from Diabetic Retinopathy.

SIGNIFICANCE: People with vision loss from diabetic retinopathy (DR) and diabetic macular edema (DME) use problem-focused and emotion-regulation strategies that may influence their short- and longer-term adaptation and psychological outcomes. Our findings can assist the development of models of adjustment to DR/DME-related vision loss and treatments focused on adaptation.

PURPOSE: To qualitatively determine the coping strategies used by participants with vision loss resulting from DR/DME.

METHODS: Fifty-seven participants with DR/DME engaged in one of eight focus groups or one of 18 semistructured interviews. Participants were mostly older than 55 years (mean, 58.7 years) and male (68%) and had type 2 diabetes (74%; median duration, 17 years). Almost 50% had proliferative DR, 95% had undergone laser treatment, and 42% had DME; 68%, 14% and 14% had none, mild (<0.3 logarithm of the minimum angle of resolution ≤ 0.48), and moderate-severe vision impairment (>0.48 logarithm of the minimum angle of resolution) in the better eye. Focus groups/interviews were transcribed verbatim and iteratively analyzed using the constant comparative method. Qualitative software NVivo 2008 was used to sort/store the data. Our top-down and bottom-up approach to conceptualize the data was informed by the Transactional Model of Stress and Coping.

RESULTS: Coping efforts were mostly problem focused (64%) with seven subthemes: problem solving, passive coping, changing activities to suit a new ability level, active coping, rehearsing alternative outcomes, maintaining independence, and information seeking. Emotion-regulation strategies were distraction, acceptance, alternative adaptive thinking, avoidance, expressing emotions, denial, and changing emotions. Meaning-based coping strategies included mindfulness and engaging in meaningful activities. Themes relating to adaptation and moderators to coping (e.g., dispositional optimism) are outlined.

CONCLUSIONS: Participants described a variety of ways to cope. Some strategies are likely to improve functioning and decrease distress, whereas others are expected to reduce immediate distress while perpetuating this in the longer term. Our findings may assist researchers to develop models of adjustment to DR/DME-related vision loss and psychosocial/educational interventions focused on adaptation.